Drinking and PA / IDA

[still_elsewhere]

This is a silly question on its surface, because Prosecco isn’t exactly a health tonic — we all know that!

But I was wondering if PA (and/or IDA) might offer an explanation for a pattern I’ve noticed. (Or maybe it has nothing to do with PA and everything to do with alcohol itself, which — fair!)

Last night my husband and I went out for dinner outside for the first time since January. We celebrated by splitting a bottle of Prosecco. Since we also had a healthy dinner (mine in two batches — I’m wondering if PA explains why I tend to often eat a single dinner in two servings separated by a few hours), I wasn’t hungover at all this morning, and we didn’t stay out late at all, but I did experience severe lethargy and a really low mood all day today. My brain fog was also astonishingly bad. This has happened a few times over the past few months.

So, what are your experiences with PA and alcohol? Do you drink less now that you've been diagnosed? Or is the low mood and lack of energy (even without other hangover symptoms, like a headache) just a normal alcohol-after-30 thing that I should be aware of?

Thanks for your time!

[Seth12345]

If you are still recovering from the b12 deficieny it's probably best to avoid alcohol for now. It can really mess you up.

[still_elsewhere in reply to Seth12345]

Thanks for the advice! Yes, I started treatments just about a month ago for both IDA and PA (two shots and two iron infusions) — so difficult to be patient, but I’m hoping that my levels will tick up and I’ll start feeling better soon.

[Emmers5]

I've been wondering that myself! I rarely drank before treatment, always felt like I'd already had a few. Now I have a few drinks once in awhile and I feel almost like my b12 was depleted by the next morning.

[still_elsewhere in reply to Emmers5]

Right — before diagnosis, I kept waking up with a splitting hangover headache — only I hadn’t had anything to drink! It baffled me.

[Nackapan]

I've fancied a glass of wine a few times in 2 years. Something has stopped me. I'm still too symptomatic.

It's a known depressive so probably does account for low mood.

Its obviously a personal decision . We have to try and live our lives as best as possible.

Someone wrote on here once about 'pretending to be normal' I fully identify with this. I can pretend for about 2 hours.

Old habits, associations i think good to test at times.

I look forward to a glass of wine when i feel i can.

Sounds like a good evening.

[still_elsewhere in reply to Nackapan]

Thanks for sharing your experiences! I look forward to wine for us, too.

And re: “pretending to be normal,” yes, I think I’m still trying to figure out how much these conditions might alter my daily life. I have about four friends who are currently medical residents; only one of them warned me that regular shots might not be a perfect panacea. Everyone else seems to assume that I’ll “get back to normal” soon and that there’s no need to change anything I’m doing. I suppose time will tell? (At this point, I’ve been a sleepy person for so long that daily naps really do feel like part of my personality / a quirky choice...)

[fbirder]

Alcohol has zero effect on how much B12 I need, or my symptoms (except my ataxia gets worse after 8 gins, but it did that before).

As for your eating - yes, that's me.

At my last gastroscopy the doc commented on how I had a small, tube -like stomach with no folds (bald in the official parlance). This is, apparently, very common in people with gastric atrophy (the base cause of PA).

This is the reason why I've had, for as long as I can remember, a birdlike appetite. I cannot eat a full meal. When I cook at home I cook for two, and the meal gets split 3:1 otherwise I can't finish it.

It does mean I need to snack, because I'm hungry again a short time later. Which is why my weight is a problem.

[still_elsewhere in reply to fbirder]

Interesting! Thanks for this info. — how crazy that the physical properties of our stomachs can be different in those ways.

And yes, I’ve literally never been able to understand how people out to dinner can have appetizers and entrees — and then dessert! I’d die! (I can have dessert, but it’s always a good two hours after dinner.)

[fbirder in reply to still_elsewhere]

My friends joke about my 'ice cream stomach'. They are convinced I have a special stomach for puddings. I say that ice cream just melts around the rest and fills in the gaps. I often just have two starters and no main course . That leaves a long gap while people eat their massive portions.

I watched the Diagnosis Detectives (check it out on BBC iPlayer - worth watching the whole series) where they did a gastroscopy and was astounded at just how wrinkled her stomach was compared to mine.

[Nackapan in reply to fbirder]

Yes when I was able to dine out I had 2 starters

[Hidden in reply to fbirder]

That’s interesting. I ALWAYS end up saving half for the next day when I get a takeaway. The portions are too big for me to eat at once. I also feel very ill if I do ever have a 3 course meal out (sometimes I do try but not very often). And when we have Xmas dinner at my parents I never eat as much as anyone else and always leave dessert for an hour later!

As far as alcohol goes, I have a good collection of gin but I’ve always blamed reaching my 30s (I’m now nearly 40!) for not being able to handle alcohol. I can have 2 drinks max or I feel terrible and I hate the feeling of being drunk. The next day I’ll be grumpy and tired l. Like you say I blamed it on age, but since diagnosis and reading up on P.A. I’m wondering if it’s been that for a lot longer than I realise.

[Hidden in reply to Hidden]

And come to think of it I’ve just made myself a hot chocolate but I know that’s going to make me feel bloated and full.

[still_elsewhere in reply to Hidden]

It’s always nice to know we’re not alone! — the appetite thing being a much more palatable commonality than the drinking thing (since the former involves timing but the latter might require abstinence — sigh)!

[Nackapan in reply to still_elsewhere]

I'm a little and often person too. I always thought thats why I stay very slim! Everyone different. No way can I have a big meal in the late evening. Has never suited me. Now I simply too tired to digest it Like you my pudding is 2 hours later. Now fortunately I can have my dinner at lunch time . Picks me up rather than knocking me out. It may be after years of working with children who are much better eating their main meal muddy day? And also smack with them. The day nursery routine worked well with me. Breakfast snack lunch snack Tea snack. lol .

So why I cant absorb enough iron this way must be an absorbtion problem like b12.

[fbirder in reply to Nackapan]

"And also smack with them."

Don't let social services hear about this!

[Nackapan in reply to fbirder]

😂 my typos will get me into trouble 🙃.

[still_elsewhere in reply to Nackapan]

Interesting — I’ve noticed that meals tend to knock me out too, so usually I’ll intentionally have a snack right before bed! It seems to do the trick...

[onyx33 in reply to fbirder]

Relate to everyone discussing poor appetite but have never been referred to any of the medical specialities related to any of the functions affected by PA . Have only ever seen GP wondering if this is common.

[still_elsewhere in reply to onyx33]

I wish I could help! — I only have my own experience, which might be informed as much by my IDA as by my PA — that is, I’ve been referred to a hematologist but no one else, at least not yet. If you’re still in early days (as I am) or don’t have other severe symptoms, it might be common to wait?

[onyx33 in reply to still_elsewhere]

I was found to have the auto antibodies that lead to PA around ten years or more before I was diagnosed with PA, had annual B12 blood test that is now known was unreliable. I think I had symptoms of PA way before treatment started but not knowing the B12 test was unrealiable I attributed these symptoms to Hashimoto's which I also have. I was diagnosed with PA in 2012 and started the normal treatment, loading doses and one injection every three months but became ill with symptoms of B12 depletion in 2014. a delay in treating these symptoms because GP's at my practice believed B12 to be toxic, left me with some permanent damage and over all I think the NHS needs a wake up call around the subject of PA. I don't think my experience is uncommon. I now have monthly injections but no assessment of PA symptoms by anyone when I think about, it ever.

[still_elsewhere in reply to onyx33]

I’m so sorry to hear this story — it sounds so difficult and frustrating. And yes, it makes advocacy groups like PAS seem very vital.

[onyx33 in reply to still_elsewhere]

Absolutely, good luck with your treatment and thanks for the sympathy, it is crazy being told the treatment that will keep you well is toxic but I know otherPA patients have been told this too.

[Hidden]

I can no longer drink alcohol as 1 glass of wine i have a hangover and upset stomach. The last few years I can only eat little and often , unlike when I was younger having been able to have a 3 course meal. I assume it is all to do with my B12 deficiency.

[still_elsewhere in reply to Hidden]

Thanks for sharing! Yes, it seems many people with PA feel this way — so at least we know we’re not alone —

[lifegems]

For me living abroad, drink is a big part of life.. maybe too much. I’ve noticed that my tolerance is much lower though nowadays and hangovers far worse. The ideal balance I feel is regular exercise, healthy food weekly shots of b12 and sharing a bottle of wine with my hubby but trying to have a few days alcohol free.. the problem comes if we go out with friends then that half bottle often turns into a full bottle and I seem to suffer more than the others with symptoms of hangover.. it’s a difficult balance ! I’ll be wiped out the next day and others not so much !

[Nackapan in reply to lifegems]

Something to work towards for me

[still_elsewhere in reply to lifegems]

Thanks for sharing! I feel like I’ve been super tentative lately with exercise (which is probably bad) and now drinking (which might actually be good) because I don’t want to ‘squander’ any B12 or inhibit the shots from working in any way (even though I’m not sure either activity would compromise the B12) — that said, I’ve been prescribed monthly rather than weekly shots. Depending on how things go (it’s still early days for me), I might have to explore more frequent injections to get back to my former levels of exercise and etc.

[Elenap in reply to still_elsewhere]

Alcohol and exercise can both deplete B12.

[keith1954]

Soon as I drink alcohol I feel really ruff the next day and brain fog ,I really feel awefull the next day so not drinking anymore as I think health more important.

[still_elsewhere in reply to keith1954]

Thanks for sharing! Yes, I’d also rather feel alert and motivated on a Saturday morning than tired, depressed, and confused because I had some wine the night before.

[MariLiz]

I definitely have a lower tolerance to alcohol since my B12 has been low. Even with regular treatment ( injections) , I haven’t seen any improvement with that. So I only have a drink on special occasions, and find it’s best to have less than I used to.

[still_elsewhere in reply to MariLiz]

Thanks for confirming some of my suspicions! — yes, I think I’ll abstain for a while, or else track symptoms when I do indulge. Surely the patterns will be informative.

[Tuscansun]

If you feel sleep/tired after food/drink, that means you were allergic to something in the meal.

[Cinders70]

I definitely can’t drink alcohol as much since I’ve been diagnosed with B12 deficiency. It really knocks me sideways, especially gin. I did enjoy a G&T but seldom have them now. The odd glass of red wine seems ok.

[still_elsewhere in reply to Cinders70]

Do you mean while drinking or afterwards? (Or both?) — just curious because I’ve mostly noticed the after effects, which seem different from those of a typical hangover...

[Cinders70 in reply to still_elsewhere]

Oh, definitely just afterwards. I’m absolutely fine while drinking, which is lethal! My energy levels deplete massively if I have more than a couple of small drinks.

[Elenap]

Alcohol does deplete B12. So either don't drink, put up with the side effects or self inject to top up

[bookish]

Hi, only just saw your post, but was interested in the alcohol. I could never tolerate much and although I hesitate to mention methylation, it seems that alcohol impairs your folate cycle. I have a (common) MTHFR variant and other connected genetic SNPs which are (I tested) actually affecting my liver function (especially phase 11 - conjugation incl. methylation). I avoid the alcohol, but it might be worth some thought. Best wishes

[still_elsewhere in reply to bookish]

Interesting science! — thanks for sharing this knowledge.